MS102 - Advanced Tip Sheet for GPs

In my last post, I outlined five take-home messages to doctors that draw to your attention how to (and how not to) treat a patient when there is considerable uncertainty surrounding the diagnosis. In this second instalment of my guide for GPs, I’d like to focus on the important, yet under-appreciated and certainly under-discussed, notion of Managing Expectations. I’m focussing on this because I concede that it may not always be clear how to deal with an entity of apparently normal appearance that keeps frequenting your medical office and fills up all the space on your hard-drive with her MRI reports, pathology results and specialist referrals. Rather than approach each appointment with a sense of trepidation over what precisely she is wanting from you, rest assured the bar is in fact quite low so long as you are pleasant enough, laugh at her jokes (no matter how poor the humour is) and have a basic appreciation of the additional stresses imposed on those who bear the burden of living with such an unpredictable and chronic medical condition. Firstly,

Reassurance is paramount: The most important thing to be aware of, as a doctor dealing with a newly diagnosed patient or one in the middle of a relapse, is that they probably want, above all else, reassurance that (hopefully) the current state they are in is going to improve soon. Now is not the time to inquire as to how clean your patient’s house is and to rebuke them if they honestly acknowledge that chaos reigns. If you can, minimise such irrelevant and unhelpful probings into their personal lives and stick to the positives. Obviously it would foolish to promise anything definitive in terms of time-scales here, but do feel free to employ a range of general soothing and comforting statements. Even if that is the only thing you do in that appointment, that may be all your patient is looking for. If you do this well enough, she may be knocking on your door again soon because…

MS diagnosees tend to be “frequent fliers” in the medical system: That’s right GPs. You’ll quite likely to see more of your average MS patient than others in their age range, so hopefully you have a good comfortable doctor-patient relationship going (don’t stress, so long as you have perfected those soothing statements mentioned above and avoid the inappropriate interrogations mentioned in my previous post, you’ll be fine). Please note MS/pre-MS patients are not there because they are paranoid hypochondriacs, but simply because chronic inflammation can cause a whole lot of non-specific niggles (fatigue, anyone?) on top of the usual neurological symptoms, and neurologists don’t tend to be so well-positioned to problem-solve these type of issues. Be prepared to think outside of the box too. Often drugs are used “off-label” in order to bring some relief. However, be mindful that….

Just because a patient has MS/pre-MS, doesn’t mean they can’t get other things too: Therefore, please don’t jump to the conclusions that all symptoms reported are related to demyelination. They could well be, but then again, there could easily be something else going on too. In fact, studies have shown that although people with MS have lower rates of most cancers (hooray!), they have a higher likelihood of developing breast cancer (boo). Furthermore, non-specific symptoms of other causes can be masked by the background of MS-non-specific symptoms, meaning that tumours are larger by the time they are detected. Statements like “So now you think you have cancer too?” should only be uttered in your head and never aloud, because you do risk inflicting yet more psychological trauma on your already stressed out patient. Best to simply assess everything on its merits and/or be appropriately hypervigilant in these scenarios. Be mindful too that…

Collaboration is key: MS diagnosees may well need to be referred on to other specialists and often these folk view the patient through the lens of their own speciality (e.g. neurologists focus on brain and spinal/cord, cardiologists, the heart and circulatory system etc.). It is helpful if specialists communicate with each other to make sure any prescribed drugs targeting one medical issue aren’t detrimental to an issue relating to another organ system. On top of this, your typical MS patient, who actually has to take the drugs and live with the side effects, will in all likelihood want a say in any decision-making going on, and now is not the time to invalidate their opinions and play God. Continuing to overrule a patient who keeps imploring you to reduce dosages of clearly deleterious drugs falls well outside the bounds of your authority and will not promote loyalty and gratitude. Conversely, being responsive and respectful of a patient’s input will hold you in good stead because MS patients often take it upon themselves to do their own research and may be more aware than you are of potential payoffs and pitfalls of pharmaceutical interventions. But you should sharpen your listening skills in any case because…

MS diagnosees just want to be heard: As a GP, you may well need to be their champion, their advocate and their hand-holder, all at the same time. If you are not willing or able to play these roles, best to state that at the outset, so that there’s no confusion or disappointment down the track. This holds especially true if, when your itinerant MS patient rocks up with new symptoms requesting your assistance to liaise with her neurologist, you not only do nothing, but fail to indicate that you were never intending to. Ignoring the plight of an MS/pre-MS patient experiencing a relapse is frowned upon and if you’re a serial offender in this regard you might just find yourself blacklisted within the MS community. However, assuming that you are happy to use your GP powers to intervene when necessary to bypass medical receptionists and assist with communicating with specialists, there will also be other times when your role is less superhero-esque. While you may be tempted roll your eyes when your MS patient pops in to pick up her latest surveillance imaging results and then proceeds to spout on about the intermittent symptoms of the past few months, it would be courteous to refrain from actually doing so. By all means respectfully suggest she book a double appointment next time, but please stifle those yawns. She doesn’t actually intend to bend your ear over her multiple medical quirks and niggles – she probably just wants to draw to these things to your attention so that they are on file and to get them off her chest. And finally…

No really,MS diagnosees just want to be heard– many of us have had such a convoluted journey to our diagnosis that we really want to vent and scream (or blog!) about the shortcomings of the system.

So please GPs & all other flavours of medical professionals, I urge you to bear all these things in mind when you next chance upon an MS/pre-MS patient. A modicum of respect will go a long way towards securing their appreciation and allegiance.

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